Our ‘mother’ society in the UK has just launched a crowdfunding campaign to raise funds for a global Black Bone Disease registry in order to gather information about AKU patients around the world in one single place. This will allow all of the AKU societies representing patients throughout the world to make the case for access to the life-changing…
Author: Denise Higgins
Support a UK Pediatric Study of AKU
Tune in to hear Jess Barnes talk about the amazing AKU Society on @bbcradio4 SUNDAY 7.54am & 9.25pm THURSDAY 6 MAY 2021 3.27pm The AKU Society in the UK is raising funds to launch the first ever pediatric study into Alkaptonuria aka Black Bone Disease. A disease that, if left untreated, causes bones to turn black…
Nitisinone approved by the European Commission!
The AKU Society in the UK is incredibly proud to announce that the European Commission (EC) has extended the existing marketing authorisation for nitisinone use in AKU. This is the culmination of years of hard work and dedication. “We hope this decision means that patients across Europe will now begin to be able to access nitisinone. With this…
Sonia 2 Nitisinone Trial Results
SONIA 2 and DevelopAKUre – Results We are delighted to announce that all the data from the SONIA 2 clinical trial has now been analysed and very positive trends have been highlighted. Due to this, SOBI (Swedish Orphan Biovitrum) announced that they are going to apply to the European Medicines Agency (EMA) for market authorisation…